Reposted
The people who live with ME/CFS did not greet Long COVID with surprise. They greeted it with recognition.
Gratitude to
@darthfoo.bsky.social
open.substack.com/pub/centerle...
Gratitude to
@darthfoo.bsky.social
open.substack.com/pub/centerle...
Those Who Were Already Here
Learning to Live Inside a History I Did Not Choose
open.substack.com
February 8, 2026 at 5:16 PM
The people who live with ME/CFS did not greet Long COVID with surprise. They greeted it with recognition.
Gratitude to
@darthfoo.bsky.social
open.substack.com/pub/centerle...
Gratitude to
@darthfoo.bsky.social
open.substack.com/pub/centerle...
Reposted
It's been 10 months with ixekizumab for other autoimmune disease.
6m w/out osteo pain. Arthralgias disappeared. Cognitive function for 3h is SO good (coming from hell before)
Why aren't broad range monoclonals used for #MyalgicE as used for MS, RA?
Not a cure but a treatment!
Why are we left to rot?
6m w/out osteo pain. Arthralgias disappeared. Cognitive function for 3h is SO good (coming from hell before)
Why aren't broad range monoclonals used for #MyalgicE as used for MS, RA?
Not a cure but a treatment!
Why are we left to rot?
February 8, 2026 at 12:02 PM
It's been 10 months with ixekizumab for other autoimmune disease.
6m w/out osteo pain. Arthralgias disappeared. Cognitive function for 3h is SO good (coming from hell before)
Why aren't broad range monoclonals used for #MyalgicE as used for MS, RA?
Not a cure but a treatment!
Why are we left to rot?
6m w/out osteo pain. Arthralgias disappeared. Cognitive function for 3h is SO good (coming from hell before)
Why aren't broad range monoclonals used for #MyalgicE as used for MS, RA?
Not a cure but a treatment!
Why are we left to rot?
Reposted
The ability to advocate effectively for oneself when living with severe #ME & without proper support is drastically underestimated
Many #pwME remain under-supported in multiple areas of their lives, not able to meet their own needs & with no-one available to provide vital help & support
Many #pwME remain under-supported in multiple areas of their lives, not able to meet their own needs & with no-one available to provide vital help & support
February 8, 2026 at 12:16 PM
Reposted
@francesryan.bsky.social @goodlawproject.org
Are you aware of the below? NHS is slowly starving a severe #ME/CFS patient to death. Ofc it's a woman.
Very similar to how Maeve Boothby died 5 years ago, and despite a prevention of future deaths report, nothing has changed.
Can you help in any way?
Are you aware of the below? NHS is slowly starving a severe #ME/CFS patient to death. Ofc it's a woman.
Very similar to how Maeve Boothby died 5 years ago, and despite a prevention of future deaths report, nothing has changed.
Can you help in any way?
#mecfs #pwME
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 8, 2026 at 9:56 AM
@francesryan.bsky.social @goodlawproject.org
Are you aware of the below? NHS is slowly starving a severe #ME/CFS patient to death. Ofc it's a woman.
Very similar to how Maeve Boothby died 5 years ago, and despite a prevention of future deaths report, nothing has changed.
Can you help in any way?
Are you aware of the below? NHS is slowly starving a severe #ME/CFS patient to death. Ofc it's a woman.
Very similar to how Maeve Boothby died 5 years ago, and despite a prevention of future deaths report, nothing has changed.
Can you help in any way?
Reposted
Cornell researchers performed longitudinal plasma proteomics (SomaScan7K ) in 79 #MECFS vs 53 controls around two maximal CPETs. Findings: Persistent immune & metabolic dysregulation in recovery, linked to PEM. Learn more on our website.
neuroimmune.cornell.edu/news/uncover...
#PwME #CFS
neuroimmune.cornell.edu/news/uncover...
#PwME #CFS
Uncovering Protein Signatures of Post-Exertional Malaise in ME/CFS – Cornell Center for Enervating NeuroImmune Disease
Post-exertional malaise (PEM) is the hallmark symptom of ME/CFS: an exacerbation of symptoms triggered by physical or mental exertion that is often disproportionate to the activity. While PEM has long been recognized as central to ME/CFS, the molecular mechanisms underlying this debilitating response have remained largely unknown.
neuroimmune.cornell.edu
February 7, 2026 at 7:24 PM
Cornell researchers performed longitudinal plasma proteomics (SomaScan7K ) in 79 #MECFS vs 53 controls around two maximal CPETs. Findings: Persistent immune & metabolic dysregulation in recovery, linked to PEM. Learn more on our website.
neuroimmune.cornell.edu/news/uncover...
#PwME #CFS
neuroimmune.cornell.edu/news/uncover...
#PwME #CFS
Reposted
#mecfs #pwME
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 7, 2026 at 6:19 PM
Reposted
5) Correa da Silva said they looked at the HPA axis because low cortisol has been linked to ME/CFS symptoms. But: “The magnitude of the changes in the brains of people with ME seem to be very high, much more than we expected initially.”
February 7, 2026 at 1:54 PM
5) Correa da Silva said they looked at the HPA axis because low cortisol has been linked to ME/CFS symptoms. But: “The magnitude of the changes in the brains of people with ME seem to be very high, much more than we expected initially.”
Reposted
1) 🇩🇪 Scientists and clinicians based at institutions located in Germany can apply for the 2026 research funding programme of the ME/CFS Research Foundation.
€2 million is available for new research projects. The deadline for submitting proposals is 30 April 2026.
€2 million is available for new research projects. The deadline for submitting proposals is 30 April 2026.
February 7, 2026 at 8:17 AM
1) 🇩🇪 Scientists and clinicians based at institutions located in Germany can apply for the 2026 research funding programme of the ME/CFS Research Foundation.
€2 million is available for new research projects. The deadline for submitting proposals is 30 April 2026.
€2 million is available for new research projects. The deadline for submitting proposals is 30 April 2026.
Reposted
1) 🏴 Researchers from Cardiff University followed-up on their findings on complement activation in Long Covid. In this new study, they found differences in the lectin pathway and suggest it might explain endothelial damage and persistent coagulopathy in LC.
February 6, 2026 at 8:59 AM
1) 🏴 Researchers from Cardiff University followed-up on their findings on complement activation in Long Covid. In this new study, they found differences in the lectin pathway and suggest it might explain endothelial damage and persistent coagulopathy in LC.
Reposted
Viruses appear to play a meaningful role in aging.
Across a lifetime, infections may speed up immune aging, increase long-term inflammation, and raise the risk of age-related diseases.
Across a lifetime, infections may speed up immune aging, increase long-term inflammation, and raise the risk of age-related diseases.
February 5, 2026 at 9:06 AM
Viruses appear to play a meaningful role in aging.
Across a lifetime, infections may speed up immune aging, increase long-term inflammation, and raise the risk of age-related diseases.
Across a lifetime, infections may speed up immune aging, increase long-term inflammation, and raise the risk of age-related diseases.
Reposted
1) The Dutch NMCB research consortium held its General Assembly. Researchers of multiple ME/CFS studies reported their current status and findings.
Here are a couple of things that caught our attention...
Here are a couple of things that caught our attention...
February 5, 2026 at 9:55 AM
1) The Dutch NMCB research consortium held its General Assembly. Researchers of multiple ME/CFS studies reported their current status and findings.
Here are a couple of things that caught our attention...
Here are a couple of things that caught our attention...
Reposted
We demonstrate that IgGs from ME/CFS patients carry a chronic protective stress response that promotes mitochondrial adaptation via fragmentation, without altering mitochondrial ATP generation capacity in endothelial cells.
www.sciencedirect.com/science/arti...
www.sciencedirect.com/science/arti...
February 4, 2026 at 9:37 AM
We demonstrate that IgGs from ME/CFS patients carry a chronic protective stress response that promotes mitochondrial adaptation via fragmentation, without altering mitochondrial ATP generation capacity in endothelial cells.
www.sciencedirect.com/science/arti...
www.sciencedirect.com/science/arti...
Reposted
A Long Covid patient's recognition and gratitude for the ME/CFS community, which has been dealing with post-viral illness for many decades without attention or research. I've had ME/CFS since 2008. Please read. #PwME
February 4, 2026 at 4:53 AM
A Long Covid patient's recognition and gratitude for the ME/CFS community, which has been dealing with post-viral illness for many decades without attention or research. I've had ME/CFS since 2008. Please read. #PwME
Reposted
Hey, #MedSky.
For reasons that elude comprehension, too many drs still wrongly believe #MyalgicEncephalomyelitis isn’t potentially fatal when it’s very much just that.
Four more of us dead just in the past week.
For the love of god, please read the research and listen to your patients.
#pwME
For reasons that elude comprehension, too many drs still wrongly believe #MyalgicEncephalomyelitis isn’t potentially fatal when it’s very much just that.
Four more of us dead just in the past week.
For the love of god, please read the research and listen to your patients.
#pwME
February 3, 2026 at 8:09 PM
Hey, #MedSky.
For reasons that elude comprehension, too many drs still wrongly believe #MyalgicEncephalomyelitis isn’t potentially fatal when it’s very much just that.
Four more of us dead just in the past week.
For the love of god, please read the research and listen to your patients.
#pwME
For reasons that elude comprehension, too many drs still wrongly believe #MyalgicEncephalomyelitis isn’t potentially fatal when it’s very much just that.
Four more of us dead just in the past week.
For the love of god, please read the research and listen to your patients.
#pwME
Reposted
A moving 'thank you' from a longCOVID patient to the ME/CFS community. Worth a read.
centerleftstack.substack.com/p/those-who-...
centerleftstack.substack.com/p/those-who-...
Those Who Were Already Here
Learning to Live Inside a History I Did Not Choose
centerleftstack.substack.com
February 3, 2026 at 2:45 PM
A moving 'thank you' from a longCOVID patient to the ME/CFS community. Worth a read.
centerleftstack.substack.com/p/those-who-...
centerleftstack.substack.com/p/those-who-...
Reposted
A psychiatrist came on Thursday and asked her why she hadn't got out of bed
open.substack.com/pub/longcovi... @longcovidadvoc.com
Savannah is calling on the community for help once again 👇#MEcfs #pwME
www.thecanary.co/uk/analysis/...
@h-sharland.bsky.social @thecanaryuk.bsky.social
open.substack.com/pub/longcovi... @longcovidadvoc.com
Savannah is calling on the community for help once again 👇#MEcfs #pwME
www.thecanary.co/uk/analysis/...
@h-sharland.bsky.social @thecanaryuk.bsky.social
February 2, 2026 at 6:15 PM
A psychiatrist came on Thursday and asked her why she hadn't got out of bed
open.substack.com/pub/longcovi... @longcovidadvoc.com
Savannah is calling on the community for help once again 👇#MEcfs #pwME
www.thecanary.co/uk/analysis/...
@h-sharland.bsky.social @thecanaryuk.bsky.social
open.substack.com/pub/longcovi... @longcovidadvoc.com
Savannah is calling on the community for help once again 👇#MEcfs #pwME
www.thecanary.co/uk/analysis/...
@h-sharland.bsky.social @thecanaryuk.bsky.social
Reposted
Dr R Kumar studies T-cell dysfxn in ME/CFS & LC. “We’re seeing profound immune diff – even from small nos of pts & controls. That means we’re identifying real biol subtypes. If we can define those subgroups we can start des tx that actually work.” [14m]
tinyurl.com/4ea4ja7c
tinyurl.com/4ea4ja7c
This Week in “What’s New in ME/CFS?”: A Q&A with Dr. Roshan Kumar - Solve ME/CFS Initiative
In our latest "What's New in ME/CFS?" interview, we speak with Dr. Roshan Kumar of HiFi Bio, an ME/CFS researcher and caregiver, about why he believes we’re on the edge of major breakthroughs.
tinyurl.com
February 2, 2026 at 3:33 PM
Dr R Kumar studies T-cell dysfxn in ME/CFS & LC. “We’re seeing profound immune diff – even from small nos of pts & controls. That means we’re identifying real biol subtypes. If we can define those subgroups we can start des tx that actually work.” [14m]
tinyurl.com/4ea4ja7c
tinyurl.com/4ea4ja7c
Reposted
Another biomedical study! I'm pleased to see it's working in collaboration with the Biobank and DecodeME. All too late for me but I hope these youngsters one day will live again. ME isn't called the living death for no reason.
#MECFS #LONGCOVID #NEISVOID
www.bbc.co.uk/news/article...
#MECFS #LONGCOVID #NEISVOID
www.bbc.co.uk/news/article...
Long Covid and ME patients 'hopeful' about Rosetta Stone study
The £1.1m Rosetta Stone study hopes to make a breakthrough by comparing both conditions.
www.bbc.co.uk
February 2, 2026 at 12:53 PM
Another biomedical study! I'm pleased to see it's working in collaboration with the Biobank and DecodeME. All too late for me but I hope these youngsters one day will live again. ME isn't called the living death for no reason.
#MECFS #LONGCOVID #NEISVOID
www.bbc.co.uk/news/article...
#MECFS #LONGCOVID #NEISVOID
www.bbc.co.uk/news/article...
Reposted
Finally, a study which might bring some answers.
Rosetta Stone study at Imperial College London sets off to find link between ME/CFS and Long Covid.
www.bbc.co.uk/news/article...
Rosetta Stone study at Imperial College London sets off to find link between ME/CFS and Long Covid.
www.bbc.co.uk/news/article...
Long Covid and ME patients 'hopeful' about Rosetta Stone study
The £1.1m Rosetta Stone study hopes to make a breakthrough by comparing both conditions.
www.bbc.co.uk
February 2, 2026 at 9:54 AM
Finally, a study which might bring some answers.
Rosetta Stone study at Imperial College London sets off to find link between ME/CFS and Long Covid.
www.bbc.co.uk/news/article...
Rosetta Stone study at Imperial College London sets off to find link between ME/CFS and Long Covid.
www.bbc.co.uk/news/article...
Reposted
1) Todd Davenport and his colleagues from the Workwell foundation published new data on 2-day exercise testing in patients with Long Covid.
These showed reductions in workload and VO2 max on the second test, similar to ME/CFS patients.
These showed reductions in workload and VO2 max on the second test, similar to ME/CFS patients.
January 28, 2026 at 8:42 AM
1) Todd Davenport and his colleagues from the Workwell foundation published new data on 2-day exercise testing in patients with Long Covid.
These showed reductions in workload and VO2 max on the second test, similar to ME/CFS patients.
These showed reductions in workload and VO2 max on the second test, similar to ME/CFS patients.
Reposted
@georgemonbiot.bsky.social is one of #pwME's most loyal courageous & committed allies.
He's a hero who tells the truth about what's been done to #pwME & by whom
There's an interview with him here, no mention of #ME but an insight into his life & his values🔗👇
creators.spotify.com/pod/profile/...
He's a hero who tells the truth about what's been done to #pwME & by whom
There's an interview with him here, no mention of #ME but an insight into his life & his values🔗👇
creators.spotify.com/pod/profile/...
George Monbiot on Exposing Power and the Fight to Save Our Planet by The Sacred
In this episode Elizabeth Oldfield speaks with writer, environmentalist, and activist George Monbiot - a fiercely anti-establishment voice shaped by resistance, trauma, and a refusal to become what Br...
creators.spotify.com
January 27, 2026 at 3:45 PM
@georgemonbiot.bsky.social is one of #pwME's most loyal courageous & committed allies.
He's a hero who tells the truth about what's been done to #pwME & by whom
There's an interview with him here, no mention of #ME but an insight into his life & his values🔗👇
creators.spotify.com/pod/profile/...
He's a hero who tells the truth about what's been done to #pwME & by whom
There's an interview with him here, no mention of #ME but an insight into his life & his values🔗👇
creators.spotify.com/pod/profile/...
Reposted
"At Little Bighorn Battlefield National Monument in Montana, exhibit text that described the United States being “hungry for gold and land” and breaking promises to Native Americans was ordered changed or removed." #NationalParks 🗃️ www.washingtonpost.com/climate-envi...
Trump’s censors hit Grand Canyon and 16 other national parks
A new wave of takedown orders from Trump officials targets signs about climate and Native Americans at several national parks, including Grand Canyon, Big Bend and Glacier.
www.washingtonpost.com
January 27, 2026 at 11:47 AM
"At Little Bighorn Battlefield National Monument in Montana, exhibit text that described the United States being “hungry for gold and land” and breaking promises to Native Americans was ordered changed or removed." #NationalParks 🗃️ www.washingtonpost.com/climate-envi...
Reposted
Full EU membership should be put to the public at the next election. It's time to return home.
inews.co.uk/opinion/rejo...
inews.co.uk/opinion/rejo...
Rejoining the EU is the only way to stop Trump
It is time to return home
inews.co.uk
January 27, 2026 at 10:54 AM
Full EU membership should be put to the public at the next election. It's time to return home.
inews.co.uk/opinion/rejo...
inews.co.uk/opinion/rejo...
Reposted
media.licdn.com/dms/document...
9 easy read slides on mitochondria & immunity. Describes #ME symptoms in graphic biochemical detail. 2025
#pwME #LongCovidME #MedSky
9 easy read slides on mitochondria & immunity. Describes #ME symptoms in graphic biochemical detail. 2025
#pwME #LongCovidME #MedSky
media.licdn.com
January 26, 2026 at 7:17 PM
media.licdn.com/dms/document...
9 easy read slides on mitochondria & immunity. Describes #ME symptoms in graphic biochemical detail. 2025
#pwME #LongCovidME #MedSky
9 easy read slides on mitochondria & immunity. Describes #ME symptoms in graphic biochemical detail. 2025
#pwME #LongCovidME #MedSky